Hostname: page-component-745bb68f8f-kw2vx Total loading time: 0 Render date: 2025-01-12T22:41:37.688Z Has data issue: false hasContentIssue false
  • English
  • Français

Forever Small: The Strange Case of Ashley X

Published online by Cambridge University Press:  11 March 2020

Eva Feder Kittay
Get access Rights & Permissions [Opens in a new window]

Abstract

I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child “forever small.” The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay “forever small” and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments.

Type
Confronting Dis-Abling Norms
Information
Hypatia , Volume 26 , Issue 3: Special Issue: Ethics of Embodiment , Summer 2011 , pp. 610 - 631
Copyright
Copyright © 2011 by Hypatia, Inc.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

References

ADAPT 2007. ADAPT youth appalled at parents surgically keeping disabled daughter childlike. Press Release Archives Article 253, January 5. http://adaptold.adapt.org/adaptpr/index.php?mode=A&id=253;&sort=d (accessed January 25, 2011).Google Scholar
Allen, David, Kappy, Michael, Diekema, Douglas, and Fost, Norman. 2008. Growth‐attenuation therapy: Principles for practice. Pediatrics 123 (6): 1557–61.Google Scholar
AMA Code of Medical Ethics. Opinion 8.081: Surrogate decision making. http://www.ama‐assn.org/ama/pub/physician‐resources/medical‐ethics/code‐medical‐ethics/opinion8081.shtml (accessed January 25, 2011).Google Scholar
American Association on Intellectual and Developmental Disabilities (AAIDD). 2007. Board Position Statement: Growth Attenuation Issue. http://www.aamr.org/content_173.cfm?navID=31 (accessed January 25, 2011).Google Scholar
Ashley's Parents' Blog. http://ashleytreatment.spaces.live.com/blog/ (accessed January 25, 2011).Google Scholar
Brosco, Jeffrey. 2006. Growth attenuation: A diminutive solution to a daunting problem. Archives of Pediatric & Adolescent Medicine 160 (10): 1077–78.CrossRefGoogle ScholarPubMed
Burkholder, Amy. 2007. Ethicist in Ashley case answers questions. CNN. http://www.cnn.com/2007/HEALTH/01/11/ashley.ethicist/index.html (accessed January 25, 2011).Google Scholar
Caplan, Arthur. 2007. Is Peter Pan treatment a moral choice? Debate over stunting a disabled child's growth pits comfort against ethics. http://www.msnbc.msn.com/id/16472931 (accessed January 25, 2011).Google Scholar
Chase, Cheryl 1999. Rethinking treatment for ambiguous genitalia. Pediatric Nursing 25 (4): 451–55.Google ScholarPubMed
Darwall, Stephen. 2002. Welfare and rational care. Princeton: Princeton University Press.CrossRefGoogle Scholar
Diekema, Douglas, and Fost, Norman. 2010. Ashley revisited: A response to the critics. American Journal of Bioethics 10 (1): 30–44.10.1080/15265160903469336CrossRefGoogle ScholarPubMed
Dreger, Alice. 1998. When medicine goes too far in the pursuit of normality. New York Times, July 28.Google Scholar
Dvorsky, George. 2006. Helping families care for the helpless. Institute for Ethics and Emerging Technologies. http://ieet.org/index.php/IEET/more/809/ (accessed January 25, 2011).Google Scholar
Feder, Ellen K. 2002. Doctor's orders: Parents and intersexed children. In The subject of care: Feminist perspectives on dependency, ed. Kittay, Eva Feder and Feder, Ellen K.Lanham, Md: Rowman and Littlefield.Google Scholar
Fitzmaurice, Susan. 2008. News and commentary about Ashley's treatment. http://www.katrinadisability.info/ashleynews.html. Last updated: March 13, 2008 (accessed January 25, 2011).Google Scholar
Gilligan, Carol. 1982. In a different voice. Cambridge, Mass: Harvard University Press.Google Scholar
Gunther, Daniel F., and Diekema, Douglas. 2006. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatric & Adolescent Medicine 160 (10): 1013–17.10.1001/archpedi.160.10.1013CrossRefGoogle ScholarPubMed
King, Larry. 2007. CNN Larry King Live: The “pillow angel.” Aired January 12, 2007. Transcripts available at http://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html (accessed February 1, 2011).Google Scholar
Kittay, Eva Feder. 1999. Love's labor. New York: Routledge.Google Scholar
Kittay, Eva Feder. 2007. A feminist care ethics, dependency, and disability. APA Newsletter for Feminism and Philosophy 6 (2): 3–6.Google Scholar
Kittay, Eva Feder. Forthcoming.The completion of care. In Care and the professions, ed. Gonalez, Ana Marta, Iffland, Craig, and Kittay, Eva. Barcelona: Social Trends Institute.Google Scholar
Liao, Matthew S., Savulescu, Julian, and Sheehan, Mark. 2007. Ashley treatment: Best interests, convenience, and parental decision‐making. Hastings Center Report 37 (2): 16–20.10.1353/hcr.2007.0027CrossRefGoogle ScholarPubMed
Noddings, Nel. 1984. Caring: A feminine approach to ethics and moral education. Berkeley: University of California Press.Google Scholar
Parens, Erik, ed. 2006. Surgically shaping children: Technology, ethics, and the pursuit of normality. Baltimore: Johns Hopkins University Press.Google Scholar
Peace, William. 2007. Protest from a bad cripple: AT and the making of a pillow angel. Counterpunch, January 18. http://www.counterpunch.org/peace01182007.html (accessed January 25, 2011).Google Scholar
Ritter, J. 2007. Forever a girl … destined to grow up. Chicago Sun‐Times, January 12.Google Scholar
Ruddick, Sara. 1989. Maternal thinking. New York: Beacon Press.Google Scholar
Saletan, William. 2007a. Girl, interrupted: The power to shrink human beings. Slate Magazine. http://www.slate.com/id/2157861/ (accessed February 20, 2011).Google Scholar
Saletan, William. 2007b. Arresting development. Washington Post, January 21.Google Scholar
Siebers, Tobin. 2008. Disability theory. Ann Arbor: University of Michigan Press.10.3998/mpub.309723CrossRefGoogle Scholar
Singer, Peter. 2008. Q&A Session. Conference cognitive disability: Its challenge to moral philosophy. http://www.stonybrook.edu/sb/cdconference/podcasts.shtml (accessed January 25, 2011).Google Scholar
Tada, J. 2007. The “pillow angel.”CNN Larry King Live. Transcripts available at http://transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html (accessed January 25, 2011).Google Scholar
Tanner, S. 2007. Outrage over girl's surgery. Monterey County Herald, January 12.Google Scholar
tenBroek, Jacobus 1966. The right to live in the world: The disabled in the law of torts. California Law School Review 54:841–919.CrossRefGoogle Scholar
Tronto, Joan. 1994. Moral boundaries: A political argument for an ethic of care. New York: Routledge.Google Scholar
Verhovek, S. 2007. Parents defend decision to keep disabled girl small. Los Angeles Times, January 3.Google Scholar
Wilfond, Benjamin, Wilfond, Benjamin S., Miller, Paul Steven, Korfiatis, Carolyn, Diekema, Douglas S., Dudzinski, Denise M., Goering, Sara, and the Seattle Growth Attenuation and Ethics Working Group. 2010. Navigating growth attenuation in children with profound disabilities: Children's interests, family decision‐making, and community concerns. Hastings Center Report 40 (6): 27–40.10.1002/j.1552-146X.2010.tb00075.xCrossRefGoogle ScholarPubMed

Supporting Information

Additional Supporting Information may be found in the online version of this article:Google Scholar